Dylan’s health research story
In 2021/2022 almost 1.3 million people took part in over 4,600 health and social care research studies. This public participation has provided valuable knowledge to help people live healthier and better lives, now and in the future.
We are highlighting one very special story from DNA hero, Dylan, a young participant in the DNA, Children + Young People’s Health Resource (D-CYPHR).
Dylan is a 14 year old student at the Cambridge Academy for Science and Technology (CAST), a specialist STEM school for pupils aged 13-19.
He recently met Dr Xand Van Tulleken, one of our D-CYPHR ambassadors at an exciting event held at the CAST school.
Dylan has a congenital heart defect called Ebstein’s Anomaly. It was missed on all prenatal scans; he was only diagnosed just after birth.
At 7 years old, he had the Cone procedure surgery to form a working tricuspid valve. This was major open heart surgery and involved a heart bypass machine and an intensive care stay. This procedure was carried out at Great Ormond Street Hospital (GOSH).
Dylan’s Mum, Camilla:
"Dylan decided he would be the perfect candidate for the D-CYPHR children’s health research programme because he knew his heart condition was caused by a genetic defect."
Dylan has previously taken part in genetics testing at Addenbrookes for the 100,000 genome project initiative by Genomics England. They were able to confirm that he has a mutated GATA4 gene and that this is the cause of his heart defect.
With guidance and support from his parents, Dylan joined D-CYPHR online by answering a health and lifestyle questionnaire and donating a sample of spit, in a kit sent in the post.
Dylan said:
“I was really happy to take part in the research. It was so quick and easy to do. A few minutes of my time could really benefit other children. Knowing that I have a DNA mutation it would have been selfish of me to not take part and help others. I hope lots of others sign up and help."
Take part just like Dylan
Most diseases start in childhood, but most health research is carried out in adults.
D-CYPHR wants to change this by supporting health research for ages 0 – 15, pioneering new treatments and creating better care for children and the adults they will become.
D-CYPHR needs volunteers both with and without health conditions to better understand childhood health. By studying thousands of DNA samples together with health information, scientists can begin to see the big picture of how our genes and our environment influence our physical and mental health.
Involvement from young heroes could provide clues for diabetes, mental ill-health, heart disease, rare diseases, immune conditions (and many more).
Families with children and young people can help from home, just by spitting in a tube.
Join D-CYPHR and become a part of the biggest health research movement for children and young people. Visit our website to find out more about how you can get involved.